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Unreasonable

Good morning everyone. Hope today is great! I hope someone can help me understand myself please. I get up at 6.15am because I cannot get up myself and my OH goes to work. I spend 11 hours on my own (my son passes through after school at 4). I cannot walk and cannot go out. My parents visit once a week for 2 hours and my brother comes once a month for half an hour. My OH takes me out once at the weekends sometimes. He once said to me that "I go out more than most :frowning: The worst thing about MS is that, apart from memory, the mind is still as sharp as before and you are aware of everything. I feel my quality of life is sh.t. Am I unreasonable? Should I “accept” things as I am disabled and therefore “second class”. I shouldn’t expect more. I don’t know. All I do know is I don’t want to be disabled anymore. If God exists, He hates me.

OMG you are so not “second class”, I’m really sorry that you feel this way, people that don’t have this condition just can’t understand what it feels like, they see you and think, oh she/he looks ok, so they think we are ok, also because they are just getting on with life they don’t realise that we get lonely, I know for me getting out is not as easy as it was, fatigue being the worst, not being able to walk very far, or for very long, I have a wheelchair so I can go out with my husband, but I really wanted to go out on my own in the week, so I purchased a small scooter, for me its the best thing I’ve ever done, it goes in the back of the car, great, so the point I’m getting to is, is it not possible for you to get a scooter, one thats already set up, just for you to get on and go, it would open up a whole new world for you, also are there any groups in the area you could join where they would come and pick you up, and to finish, again you/we are not second class, and we all deserve more, take good care, Jean x x

You are a person of great value. Do not allow others to make you feel like you are not worthy! If others are telling you that you are a second class then they are speaking out of line.

You are not a second class person, no matter what the disease is doing to you! I am sorry to hear that someone is making you feel like less of a person. You are of value! Do not give in to the feeling of being less than the important person you are.

Each person has value. There is none that should ever be considered to be “less than” others.

You are an important person. That is the bottom line. You have value!

You are a person of great value. Do not allow others to make you feel like you are not worthy! If others are telling you that you are a second class then they are speaking out of line.

You are not a second class person, no matter what the disease is doing to you! I am sorry to hear that someone is making you feel like less of a person. You are of value! Do not give in to the feeling of being less than the important person you are.

Each person has value. There is none that should ever be considered to be “less than” others.

You are an important person. That is the bottom line. You have value!

I would be bored stiff too. Is there anything you’d like to do in particular? there are services to help you.

I wish I could take away your hurt. I feel also feel as you do,my husband leaves for work at 7.30 and gets home around 6pm, l don’t see anyone during. The day except maybe the postman, we lIve in a semi rural location lm unable to get out alone so l shuffle around the bungalow during the day or sleep. I tried to explain that l feel as though lm existing and not living. My hubby is wonderful , l know he feels guilty leaving me but he has to work. I just get so mad when. People say you look so well, when inside l feel like lm dying, Yes it is a crappy life , and l wish things would change , try to stay strong , Take Care ,xx

You certainly are not a second class citizen, and anyone who tells you that you are has to be at least third class. You do seem to be very down in the dumps though. Have you thought about having a course of some anti depressants? Or you could ask your GP to get you a counsellor? It seems as if you feel largely ignored so it can only do you good to have someone to talk to who understands how lonely you must be feeling. Best of luck in getting hold of a qualified counsellor, as he/she might be able to point you in the right direction to perhaps get more help.

Hugs and best wishes,

Moira

why don’t you speak to a social worker who may be able to help you get payments for a personal assistant.

most people get this after they have been in hospital but maybe its worth a try even if you havent been in hospital.

the P.A. is employed to take you out wherever you want to go.

good luck

carole x

What DLA are you on you may be entitled to more help. maybe carers could come in, also you said your brain is still functioning properly have you maybe thought about some volunteering from home I live in North lanarkshire and there is a volunteer orgainisation that deals with different types of volunteering , also is there a MS club near you ,sometimes they can provide transport or can your MS nurse tell you about things in your area , I know what you mean about the lonliness I now volunteer a few days a week and also try and go swimming , my husband works away and my son is either working or at uni and to tell you the truth some friends are not very thoughful about my condition so i have to make arrangements thast suit my condition.

There is also Open University courses again these can be done from home

A wheelchair opened up my life!

I was spending hours at home alone and I felt like a mole in a hole. I spent money that I didn’t have (overdraft) buying a powerchair. With the powerchair I can go anywhere I want without waiting for someone to take me out.

I have an access bus trip booked every Sat. I don’t do anything exciting – just the library and a bit of shopping but it’s so liberating.

I also feel able to join things so long as they are in accessible buildings. The little town where I live must have a hundred groups and societies – there’s always something going on and at last I feel that I can be part of it.

The reason I mention a wheelchair rather than a scooter is that you can get public transport with a chair but not a scooter. Scooters in taxis etc are Ok if you can cope with the folding etc but I’m too wobbly for that so it had to be a chair.

I know that the financial outlay is a big commitment but you could try wheelchair services. It has not been easy too get myself mobile again but I was determined. I am simply not prepared to accept the “second class citizen “ tag and neither should you.

Hello Anon, I wonder if you wouldn`t mind if I include charlie b in my reply, as I see you 2 are in similar situations.

I feel so concerned for you both, being alone all day and seeing very few people.

Last year I began getting Direct Payments. I was assessed by a social worker first, then I was means tested to see if I had to contribute anything towards the cost. (i didn`t, as we still have a mortgage and pay council tax).

Initially I got 8 hours a week, but as my needs increased quite rapidly, I now get 16.75 hours a week, plus 1 sleepover.

The way I use these hours is like this;

a lovely lady comes in every morning to get me up, showered and dressed. I really look forward to hearing her cheery Morning, as she comes through the door. Without this, some days I know i would be reluctant to get up. Hubby used to do this for me, but he can be quite impatient, as ye has painful arthritis to contend with.

Then 2 days a week, I am taken out shopping, or wherever I want to go.

Once a week, I have a sleepover, so hubby can get an undisturbed night`s sleep.

It all works so well and I feel part of the world again!

If ever I am too ill or the weather is too bad and I have to stay in, I hate it and go ``stir crazy`.

So girls, is any of this something you feel you could benefit from?

If so, give Social Services a call, yeh?

much luv, Pollx

Thank you for all your kind replies. Not sure what to do yet, but have a few things to think about :slight_smile:

Hiya anon,

I know your situation well,except I have better mobility than you.

Everyone leaves daily and at the moment I have my garden to occupy me,when the bad weather sets in what then??

My lack of trust of my legs and eyesight prevent me from going out alone,so I too will have the trapped at home feeling.

You must never feel second class though because your body is letting you down.

I hope you find a way out of the place you are in at the moment and I would def look at giving social services a call

I wish you well.

Pip

Hi Anon,

Have you thought about getting a mobility scooter, they give you freedom to go where you want, I love mine. I’m lucky as my OH drives me around but when we go out for the day we take it with us and I’m in charge of myself and have self respect.If for any reason he can’t drive I can get my scooter and off I go. You most certainly aren’t second class and shouldn’t think of yourself like that. You are a valueable person. Value yourself, stand up for yourself and go to local ms groups, meet others in the same position and feel better in yourself. Wishing you the strength to do it. Sending ((((HUGS))))

Janet

x

Hi Anon - Try talking to your local branch’s volunteer support worker. He / she may have some very useful literature to pass on and may be able to offer some emotional support. In addition I personally would recommend a social worker assessment and from this there may be several positive outcomes. R

Hi Anon, Though I have ms I don’t have your mobility problems but my dad does after having a massive stroke. Polly has, as ever, given excellent advice. The direct payments system can transform your life! The social worker will also have a list of all the activities and available transport to and from them. My dad was stuck in front of the telly 7 days a week not seeing anyone. Now he does Tai Chi in his wheelchair! I don’t know where you live but you obviously have access to a computer so a quick google of direct payments at your local council office should point you in the right direction. Also, my local branch of the ms society offer lifts to and from the centre for those who can’t get themselves out, they have lots of classes and activities going on and have been a godsend. Don’t know how old you are but age concern also offer lifts and have a programme of activities in most areas. Thinking of you, Chis

My mobility is so bad I cannot manage disabled toilets without my OH to lift me off the toilet. How sou you manage in the social activities. It terrifies me.

Hello Anonymous,

Obviously you can use a computer, so that’s a start. Google MS Services in your area. For example is there an active MS service in your area? I’m sure there will be someone who can give you some help, for example take you to a social meeting so you have a chance to meet other people. Is it worth trying the U3A for your area?

I’m sure there must be some way you can arrange for some one to drop in on you at home, make coffee and have a chat.

I do sympathise, it is only too easy to get into a rut and become apathetic, the rut gets deeper and so the spiral develops

Please for your sake try to break the circle. Take a look at my website - http://www.aid4disabled.com, it might offer some help.

Good luck,

Patrick

Hiya

I know exactly how you feel. I lived in Sheffield in my ‘old’ life but as I got worse I knew I had to try and do something. I was alone all day as my wife went to work at 7am and back at 6:30pm. I cannot not get out by myself and lived around hills and had no family within 90 miles. The only time I got out the house was a hobble up the street, by clinging on to my wife, 50 metres and back once a week on a Sunday. One of my sisters use to visit me twice a year for half a day.

I have moved house to be closer to family and a more flatter area on the Wirral but I am still totally reliant on people to get me out and to help around the new house. My quality of ‘life’ is improving from my ‘existence.’ However, in my own humble experience in this world we live on, it is down to yourself to try and make things ‘happen’ as no one is going to do it for you.

I do feel for you and I know what it’s like,

Marty